Raising our Porphyria Voices at the FDA!

The Food and Drug Administration (FDA) hosted the American Porphyria Foundation on Monday, August 26^th for a Rare Disease Listening Session.  Patient Listening Sessions are a way for the FDA to engage with patients or their advocates and they are one avenue for a patient community to share their experience with a disease or condition by talking directly with FDA staff. The objective of the meeting with the APF was to identify porphyria as eight distinct diseases that fall in two main categories (acute and cutaneous), to share patient perspectives on living with different types of porphyria and to convey our desperate need for treatment for all our members. Dr. Amy Dickey gave an overview of the porphyrias to set the stage for the patient talks. We were proud to have seven patients share their experiences living with Porphyria. Thank you to Jason Barrett, Jennifer Beck, Amy Chapman, Gudron Debes, Amy Dickey, Desiree Lyon, and Morgan McKillop for representing the APF community.  Each person did an excellent job sharing their message.  The FDA responded with specific questions and clarifications related to various types of porphyria – and with the feedback that we had met our objective for this meeting.

Pictured: Gudron Debes, Edrin Williams (APF), Amy Chapman, Kristen Wheeden (APF), Dr. Amy Dickey, Jason Barrett, Christopher Melton (FDA), Becca Barrett (missing: Jennifer Beck). Individual pictures: Jennifer Beck, Amy Chapman, Jason Barrett